The support you can count on
At Sanofi Genzyme, we pursue medicines that change the
standard of care for people living with
rare disease and create programs to help with various challenges rare disease can bring.
Personalized support as you start NEXVIAZYME
If you’re already a member of CareConnectPSS®, you can keep the same dedicated Case Manager and Patient Education Liaison you’ve been working with closely. They will continue to support you as you move to NEXVIAZYME and will help make the change a smooth one.
Whether you’re newly diagnosed, or starting treatment for the first time, it can be overwhelming. A member of the CareConnectPSS® team will be there to help you through each step. They offer a wide range of support services for you and your family that’s one-on-one, confidential, and personalized. Below is just some of what’s available to you.
The NEXVIAZYME QuickStart program
Ask your healthcare provider or your CareConnectPSS® Case Manager if you are eligible for the NEXVIAZYME QuickStart program. Eligible patients may be provided up to 4 infusions at no charge. We want to do all we can to create a seamless transition process and make sure you don’t miss a dose.
Complete the program application
Helpful information to have on hand when you apply:
- Your treating physician’s contact information
- Your health insurance card
Your eligibility is verified
Your application will be reviewed for eligibility. If you are eligible, you will be automatically enrolled in the program. Enrollment in the program is subject to confirmation.
Once approved, you will receive a confirmation letter and an enrollment card within 7-10 days. Contact
your Case Manager if you do not receive this confirmation.
Your healthcare provider or specialty pharmacy will also receive a phone call with instructions on how… read
to submit claims for reimbursement through the program. Your enrollment in the program is effective
from the date of approval through the end of the calendar year (calendar year is January 1 through
If you are currently enrolled in our Co-Pay Assistance Program you will be automatically enrolled in the program for the next calendar year (January 1 through December 31) unless you decide to opt out of the program or your insurance coverage changes and you are no longer eligible for the program. read less
*No claim for reimbursement of any out-of-pocket expense covered by the Co-Pay Program may be submitted to any third-party payer, where public or private. The Co-Pay Program is available only in the United States and cannot be combined with any other rebate/coupon, free trial, or similar offer. Co-Pay Benefits are not transferable. The Co-Pay Program assists patients with their out-of-pocket drug costs and the infusion-related costs of their Sanofi Genzyme therapy treatment only and does not cover or provide support for the cost of MD office visits/evaluations, nursing services/observation periods, blood work, X-rays or other testing, premedications/other medications, EpiPens, transportation, or other related services. Sanofi Genzyme reserves the right to make eligibility decisions, set program maximums, and rescind, revoke, or amend this program without notice.
You are part of a larger community that’s ready to help. There are other people and loved ones in your situation who’ve asked the same questions and need the same help; incredible, understanding people who support each other every day. Here are just a few online communities you can reach out to for information and advice or just to talk.
The organizations and online resources listed below can provide information and support to patients and families living with Pompe disease through disease education; updates on research, clinical trials, and treatment advances; support groups and counseling; and more. Please note that the websites listed below, with the exception of the Sanofi Genzyme Pompe disease website, are maintained by the sponsoring organizations; Sanofi Genzyme therefore does not control and is not responsible for the content of these websites.
Formed to assist in funding research and to promote public awareness of acid maltase deficiency, another name for Pompe disease, this US organization is a member of the International Pompe Association.
A parent- and patient-oriented support group based in the US. The AGSD was established for parents of and individuals with glycogen storage diseases, to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, and to stimulate research in the various forms of glycogen storage diseases.
A nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
The International Pompe Association (IPA) is an International federation of Pompe disease patients groups.
A nonprofit health organization dedicated to providing comprehensive services such as disease information, summer camps, and caregiver resources to individuals affected by neuromuscular diseases including Pompe disease.
A unique federation of individuals and organizations working together to build a better world for people affected by rare diseases.
This is the Pompe disease education site from Sanofi Genzyme that has information and resources for people living with Pompe as well as their caregivers and other loved ones.
An organization formed to assist patients and/or their families with medical costs and other expenses that may not be covered by insurance. The Foundation also hopes to raise public awareness of Pompe disease.
There are also various Facebook groups that focus on Pompe disease that may you wish to join.